I live in a smaller city in northern British Columbia. There aren’t many doctors and it’s hard to see one. After my fourth child was born 17 years ago, I got my first significant migraine. I grabbed 2 Tylenol and 2 Advil because the pain was so severe. When I went to see my family doctor, he prescribed a triptan. After that, I took a lot of over-the-counter medications and triptans, not really being informed that you can overuse that medication. That led to medication overuse headaches and chronic migraines. In the meantime, I was seeing physiotherapists, massage therapists and chiropractors.
A couple of years into my migraines, I was fairly depressed. When you’re in chronic pain and have 4 young children, it’s hard to cope. I was desperate to find relief and joy in my life. One physiotherapist gently encouraged me to start exercising again. I still had migraines, but exercise helped my mental health a lot.
All sorts of things go through your mind with migraine onset. You feel dizzy, you get aura and can’t see, you feel sick. Truth be told, I was scared. Did I have a brain tumour? Eventually, a different GP agreed to send me for a CT scan, but I had to fight for it. I also eventually saw a neurologist an 8-hour drive away, but he really wasn’t very helpful. His main advice was to stop drinking caffeine, which of course I had tried.
I carried on in the same pattern of medication until 2 years ago, when I started investigating on my own. I felt determined to find a compassionate migraine specialist. I found one a 14-hour drive away and asked my current GP, a nurse practitioner who lives 1.5 hours away, to refer me. I go to this nurse practitioner because she is easier to book with.
I waited a year or more for an appointment with the [migraine specialist] neurologist, and it was during COVID-19, so I could see him only virtually. He was able to explain some things, provided some reassurance and gave me the option of monthly injectable medications or Botox injections. I can’t explain why I chose Botox over erenumab. I had tried multiple preventatives before that (though I never tried topiramate, because I was worried about the side effects). For whatever reason, it felt like I couldn’t have control over the CGRP [calcitonin gene-related peptide] inhibitors; it takes roughly 3 months to leave your system and I didn’t feel prepared to take a drug like that. I might revisit that option in the future if my migraines become chronic.
I started flying down to my neurologist for Botox injections in February 2021. They started working after my fifth treatment. It was so successful that in September and October 2022, I had zero migraines, which is unprecedented for me. I’ve continued flying down every 3 months.
Travelling is not ideal. It’s really expensive. I have to fly, stay in hotels and pay an administrative fee for the injection. The price of the drug and the rest are covered through my extended health benefits, thankfully. It needs to be understood how difficult it can be to get treatment and how much it costs. In my opinion, the cost and availability of migraine treatment is often overlooked by health care providers. It’s not as simple as “here, take this pill” — we need to jump through many hoops to access the most effective and modern treatments. I had to self-advocate in order to find something that worked for me. — Joanna Esau
In Their Own Words provide extracts of interviews held between CMAJ staff and patients, families or clinicians. They are usually linked to an article appearing in the Practice section and are intended to provide complementary perspectives.
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